SOME CHRISTMAS LOVE

Watch this for all the warm fuzzy feelings of Christmas love!

 

SANTA CAME EARLY THIS YEAR!

 

Over Thanksgiving, we got the exciting news that our oldest daughter Abigail and her husband Eric are expecting their first baby in May 2025!

The boys are going to be uncles- that will be a wonderful and probably hilarious experience 😃

After Abigail and Eric got engaged, Jonah started asking about a baby.  We told him that first they had to get married.  So the day after the wedding, at the gift opening, Jonah went up to Abigail and asked her where the baby was.  Jonah is a very literal person!  

Well, his dream is finally coming true.   

There's a baby coming!

And in this particular situation, 

I think we are all as excited as Jonah!

Abigail and Eric's "official" pregnancy announcement photo for Facebook

Jonah, thinking he should be part of the pregnancy announcement- haha!

HAVE YOURSELF A BLESSED LITTLE CHRISTMAS

Everywhere you go this month, you hear strains of “Have Yourself a Merry Little Christmas,” right? It was written by Hugh Martin for the film Meet Me in St. Louis, in which Judy Garland made it famous. Sometime later, Hugh, a successful composer and lyricist, suffered a nervous breakdown – but through it, he came to know Jesus Christ! Afterward, he decided to rewrite sacred lyrics for his Christmas classic – he called it “Have Yourself a Blessed Little Christmas.”

Have Yourself A Blessed Little Christmas 

Original Words & Music by Hugh Martin and Ralph Blane 

Sacred lyrics by: Hugh Martin and John Fricke

Have yourself a blessed little Christmas, Christ the King is born. Let your voices ring upon this happy morn. 

Have yourself a blessed little Christmas, Serenade the earth. Tell the world we celebrate the Savior’s birth.

Let us gather to sing to him, And to bring to him our praise. Christ the Lord is the gift for all, 

To the end of all our days.

Sing hosannas, hymns & hallelujahs, As to him we bow. Make the music mighty as the heav’ns allow. And have yourself a blessed little Christmas now.

THOUGHT:

What can I change this Christmas season to make my celebrations and experiences be more about Jesus?

THE CONTINUING MYSTERY OF BEN

As the previous post indicates, 

we have had some great weeks with Ben.  

Pretty good behavior at home, 

and amazing behavior at school.

So why then last night did we discover he had poured his water from his bedroom water bottle down his heating vent?  

Why?  I. Do. Not. Know.

This is the continuing mystery of Ben.  He can lull you into this confidence that he can and will make good choices, and then he does something like this (or naughtier, but I'm not going to share...)

It's almost like because he has trouble trusting us 100%, he doesn't want us to trust him 100%.

Now, before you get the impression that Jonah is always making good choices, let me say this.  Jonah is 100% NOT reliable which means we always have to keep a close eye on him.  He is very impulsive, and he follows his creative train of thought wherever it might lead even if that's not where he should be.

But Ben, like I said, can be rolling along doing great 

and then he sort of sucker punches you unexpectedly.  

These boys- they both are very intriguing!

 

BIG AWARD FOR BEN!

 

Each quarter the MS teachers choose one student in each of class for an RRK reward- this stands for Respect, Responsibility and Kindness.

Our Ben won the award for his Social Studies class!

We are so proud of Ben because we are hearing from his teachers that he is very socially appropriate in his classes with his peers.  So to win an award because of this outstanding behavior is such an accomplishment for him.

Ben has social anxiety: He's uncomfortable with interactions because his first 6 years of life lacked social interactions both for him to model and to participate in.  Plus Ben likes to be in control so someone asking him something takes control of the situation away from him and gives it to the person requesting information from Ben.  This makes Ben nervous.  

So for him to overcome this anxiety and participate appropriately in a large classroom setting where some of the material being discussed is beyond his understanding is AMAZING to say the least!

Way. To. Go. Ben!

Also, I am understanding somethings about Ben's social anxiety.  For the longest time, I felt like I was his trigger because a lot of his strange and inappropriate social behaviors happens only with me.  

However, his teachers helped me understand something.  They think Ben is very concerned and in tune with wanting to be accepted and fit in with his peers.  This isn't in a bad way in terms of peer pressure, but in the good way as in this awareness helps us all choose appropriate behavior.  He's learning the skill of reading the room- a very useful life skill!  

So Ben knows to keep his social quirks and oddities to a minimum at school because as he tries to model his peers, he realizes those peers are answering questions in class, raising their hands participate, and having conversations that make sense and stay on topic.  He wants to look and sound like the other kids. 

With me, or in group of adults only, Ben probably doesn't care as much about fitting in and/or doesn't care if we are not pleased with him.  And at age 14, it's very normal for a kid to be more concerned about what his peers think of him than what grown ups think.

This made me feel better because I was feeling like I was the SOLE cause of his social anxiety, but now I'm thinking I'm just ONE of the causes.  

If you're curious, the reason I'm one of the causes of Ben's social anxiety is: 

Ben views my role in his life, his primary caregiver, as a threat to his need for control.  So any demand I make on him, including social interactions, he tends to not do as requested as a way of him maintaining control. 

WHAT IS THE PLAN?

Because Jonah's medical stuff can get confusing, I will try to summarize what our plan is for treating his severe sleep apnea. 

In January 2024, Jonah's sleep study showed severe sleep apnea because he stopped breathing 32 times per hour.  His prior 2 sleep studies showed mild to no sleep apnea.   

First, Sleep Apnea Guidelines Adults vs Children:

From John Hopkins Medicine:  In adults, Severe obstructive sleep apnea means that your AHI is greater than 30. You have more than 30 episodes per hour. Moderate obstructive sleep apnea means that your AHI is between 15 and 30. Mild obstructive sleep apnea means that your AHI is between 5 and 15.  Normal sleep means that your AHI is less than five.

From NCBI Website: In pediatric obstructive sleep apnea...An AHI score of 1 to 4.9 events/hour is mild OSA, 5 to 9.9 events/hour is moderate, and more than 9 events/hour is severe

Second, why is it so important to treat severe sleep apnea in a child with Down syndrome?

In general, for all people whether they have DS or not:

Obstructive sleep apnea is a prevalent condition wherein the upper airway becomes blocked repeatedly during sleep, leading to disrupted airflow due to muscle relaxation around the tongue and throat. This condition affects over 18 million individuals, amplifying the likelihood of heart attack, stroke, high blood pressure and related complications.

Taken from Tampa General Hospital article linked below.

Specifically for children and adults with DS:

If the individual is a child, they might: 

• Have tantrums.
• Be less willing to use words to communicate.
• Have trouble learning new skills.

An adult may: 

• Refuse to participate in normal activities.
• Be less willing to engage in conversations.
• Forget parts of their usual routine.
• Have difficulty following directions.   
• 
  
• Taken from NDSS article linked below

Third, what have we done so far to treat Jonah's severe sleep apnea?

1. Removal of tonsils.  This was actually done for two reasons: 1) constant strep throat 2) very enlarged tonsils which can be A FACTOR (not generally the sole cause) in severe sleep apnea.

2. After Jonah's tonsils were removed, another sleep study was done.  While he is still considered to have severe sleep apnea, he went from 32 events per hour to 19 events per hour.  So removing the tonsils definitely helped but didn't stop the sleep apnea.  

3. During Jonah's tonsil surgery, the ENT Dr discovered that Jonah has choanal atresia which is a bone blocking his right nasal passage.  Since this can affect his ability to breath properly both while awake and asleep, the next step was to make a opening thru this bone blockage.  This repair surgery was done yesterday.

4.  After Jonah recovers from this surgery, he will have another sleep study to see if this opened airway makes any improvement in his sleep apnea scores. Doctor is thinking there will be some improvement from the score of 19, but it doesn't seem like he is confident Jonah will move out of the severe apnea range even with this repair surgery. 

Fourth, what happens if Jonah's sleep apnea score continues be to 10 or above?

1. Besides enlarged tonsils and this blocked airway, the biggest contributor to Jonah's sleep apnea is that his tongue flops back and blocks his airway.  This is why sleep apnea is very common in people with DS because of larger tongue and floppier muscles.  

2. A CPAP device can prevent the tongue from flopping backwards.  However, the doctor doesn't think this is a good option for Jonah because:

a. The amount of air flow needed to prevent severe apnea would have to be very high and could be very uncomfortable/intense to deal with.

b. CPAP devices are not easy to deal with for anyone, but especially for an individual with DS who may have sensory issues and then also not be able to cognitively understand why he is being subjected to this.

3. That is why the ENT doctor thinks Jonah would be a great candidate for a new treatment available to kiddos over age 13 with DS: the Inspire implant currently being offered to the general adult population.  

4. So while this idea is way down the road and only a possibility if Jonah's next sleep study continues to show severe sleep apnea, this is option is part of the plan going forward.  

Click HERE for Tampa General Hospital article explaining the Inspire implant for kiddos with DS

Click HERE for National Down Syndrome Society article about sleep apnea

BEN'S ANNUAL IEP

 

Last week I participated in another great IEP for Ben!

Over the many years of doing this annual "thing", I have never had a bad experience.  I am grateful for this because I think the experience in other school districts can sometimes be very difficult and full of tension.

But even this year, with a new special ed teacher AND having to think about transition to high school next year, I felt very comfortable with everything that was proposed for Ben in this next 12 mths.

In a nutshell, what will being happening in the next 12 mths is switching from strict academic goals to what academic goals do we need to help with life and job skills?  For example, this means math is now calculator focused instead of actually having Ben do the adding, subtracting, etc.  Handwriting is switching to typing skills.  Reading skills will continue but at a functional level versus trying to obtain a certain grade level of reading.  And reading comprehension will be the big push for Ben in order for him to understand work instructions, work emails etc or enjoy a good audio book.  

The attitude from his team is very much "We will try this and if it doesn't work, we will make adjustments to make it best for Ben."  I love that!

Now having said all that, I will admit I am nervous about high school for both the boys.  It is a more independent environment- it is very likely the boys will no longer have a 2 for 1 aide with them all the time.

This means all accomodations in the regular classroom will have to be done by each individual teacher with the help of the HS special ed teacher.  This means a LOT more people to work with and make sure everyone is on the same page for EACH boy as an individual.  That's a lot to ask of a lot of people.  That makes me nervous.

I am also concerned how to determine the line between having the boys spend almost their entire day in the typical classes in HS vs working on life/job skills with the special ed teacher.  But I have to trust the team will always be willing to make adjustments as we go along to figure out what is best for the boys.

Now just a few thoughts about the eighth grade year for the boys.

For grades 4K-7th, the boys spent most their time in the special ed room.  They would only join their typical peers for art, music, gym, lunch, at in MS homeroom.  I really liked this setup because I felt the boys learned best in a smaller more adaptive environment of the special ed room.  I wasn't a "have to include" parent. I believe whatever is best for each child is the best approach. 

Before I knew about a new teacher taking over, I assumed this would be the plan for 8th grade and the big jump to spending more time in the typical classes would start in HS.

However, the new teacher had the idea that we start working on that transition during eighth grade where the boys would still have the help of their 2 on 1 aide and where the MS school layout is smaller and less intimidating than HS layout.  

What I'm finding out is this roll-out transition plan seems like a great idea.  However, I think the old way would have had great points too, mainly being one more year with very specialized instruction for almost 6 hours a day.  Since both ways have merit, I think our boys would be a good place with either approach. 

Being flexible is certainly something you need as a special ed parent!

How cool that our boys are in a situation where both Plan A or Plan B offer them cool opportunities and possibilities.  We feel truly blessed by our school system!